Sometimes It IS Zebras

Young doctors are always cautioned not to look for zebras when they hear hoof beats. That is, not to look for the unusual when there are more common explanations. The problem with this is sometimes they forget to look for the zebra in the horse herd. Dr. House aside, it’s sometimes hard to get them to think outside the box. And therein lies a tale.

As some of you who are on Facebook with me know, my boyfriend, The Boyo, was diagnosed with medullary thyroid cancer on Valentine’s Day. Personally, I could have lived without the experience. It is a rare type of thyroid cancer, and even rarer in men. It is a zebra, in other words. Because it is rare, not even cancer specialists, unless they specialize in just medullary cancer, know a lot about it. It’s also what’s known as an indolent cancer, not very aggressive, likes to just hang out for years before it’s diagnosed. Often it’s diagnosed when it has spread to other endocrine organs, which it likes to do. Especially if there is a genetic component, which is more common in men. That doesn’t seem to be the case with The Boyo, and his case is termed “sporadic.”

Remember I said this cancer is indolent? Well, The Boyo has had the lump on his neck that got him diagnosed for about ten years. Ten years is a long time, especially with cancer. It can get up to all sorts of mischief in that amount of time. They did scan him for spread to the other endocrine organs, crucial because if it’s in the adrenals, and you take the thyroid out first, it can cause the blood pressure to spike to malignant levels. Very cautious of them.

However, we now find that there is a zebra in a zebra, puzzle in a puzzle, enigma in an enigma. The Boyo has always had some level of back pain since I’ve known him. He was a construction worker in his other life, this is par for the course. A year or so ago, it got much worse in his upper back, to the point that we could no longer have sex because of his pain. Yeah, I know, TMI, too bad, deal with it.

You must understand that he was part of the 45 million uninsured people in the US for several years. Construction workers often don’t have benefits if they are non-union, and even the union folks only get benefits after they’ve worked a number of hours. The benefits also disappear if they don’t get called to a job for a lengthy period of time. Given the boom and bust cycle of construction work, this is an insane system. So he went many years without seeing a doctor, or only seeing one in the free clinic when he was sick. Finally, last year some time, he got to where he couldn’t do even what minimal work he’d been doing, and he went on disability. And so he went on Medicaid. He could finally see a doctor. Yay!

Since it had been so many years since he’d seen a doctor, he had a lot of problems. He was pre-diabetic, he had sleep apnea that was severely impairing his ability to function. And, of course, he had back pain. Since he presented with so many problems, the back pain got shuffled to the end of the list. Nobody even did so much as x-ray his back. He would have been better off with a chiropractor, they would have x-rayed his back.

Eventually someone noted the lump on his neck, and decided to do a fine needle biopsy on it. I had no idea this was going on until he came home with a report that the lump was cancerous. On Valentine’s Day. I’ve had nicer Valentine’s presents, but I’m sure this will be the most memorable.

Fast forward to now. In the mean time he’s had his thyroid out, and a radical neck dissection. This was in early May, a couple of months after the diagnosis. Because he had a fair number of nodes positive for cancer, he was referred to a radiation oncologist.

I’ve been going to his appointments with him, and reading up on this stuff on the internet. I had a thirty year career as a nurse, so I could interpret for him. He also has some short-term memory loss from a traumatic brain injury, so I am “she who remembers.” Early on, I asked about his back pain, could it be related to the cancer? One of the things that can happen is you can get a tumor in your parathyroids, and because the parathyroids regulate calcium in the body, it can cause bone pain. I was hoping for a parathyroid tumor, because that would be an easy fix for his back pain. You take the tumor out, and within hours, the back pain disappears. But his calcium levels were not high enough to indicate a parathyroid tumor. I asked about bone metastasis, a possibility with this cancer, but not high on the list of places it spreads. I was assured that it would have shown up on the scan they did pre-surgery. This did not make sense to me, because I knew the scan focused on soft tissue, not bone. And face it, the radiologist is only going to read a scan well enough to answer what they are asked about. They are not going to look hard at bones if they’ve been asked about endocrine organs. Unless something blatant shows up, it’s going to be missed.

And thus we come to the present. The Boyo was slated to start radiation therapy this last Monday. His back still hurt. He’d been to a presentation by a spinal specialist, and asked to be referred to him. The specialist wanted him to have an MRI before he saw him. And so, this last Sunday, he had an MRI of his spine. He was on the table for 2.5 hours, I don’t know how he stood it. Monday, he had his first radiation treatment, and had difficulty, and was in great pain after the 12 minute treatment. He asked them for something for pain, and was blown off, referred back to his PCP. When he got back to respite care, where he is staying, he told the nurse there about it. She called over to radiation and read them the riot act. Pain management is part of their job.

Tuesday he shows up for his radiation treatment his customary 2-3 hours early (he will not be late for his funeral, I might be but he won’t). So they start asking the “where does it hurt” questions, so they can get some pain management going. When he informs them he had an MRI on Sunday, they call for the report. I’m sure my gentle, intelligent readers know right where this is going. Yes, indeedy, the MRI showed that the cancer had spread to the bones of his spine.

Up until this time, his indolent cancer had been treated indolently. More than two months from diagnosis to surgery. A further two months to radiation. It was like watching paint dry. Suddenly, with the diagnosis of bone mets, things are happening at the speed of light. His current radiation was cancelled, he got some good drugs, (finally), he had another CT scan yesterday, and is scheduled for a bone scan tomorrow. It’s dizzying.

Meanwhile I’m angry. Even with all the delays for tests in Canada, do you think this would have happened in the Socialist State of Canukistan? Hell no!! A doctor had noticed the lump on his neck ten years ago, but he was “lost to follow-up” as shortly after he was without insurance again. This coulda, shoulda, woulda been treated ten years ago. So I’m angry at our so-called “health” care system, or lack thereof. I’m angry that in a year and a half, his PCP never got around to actually addressing his back pain. I’m angry that his back pain was never addressed in the five months since his diagnosis, until now. I’m so angry I can’t see straight. When I went to nursing school, forty years ago, (OMG, I can’t be that old, can I?), it was emphasized that we had to be aware of what was going on with the whole person, and that included what in their family or community might be impacting their illness. Unfortunately, all his doctors have had blinders on. They only saw pieces of him. And so I’m angry. They can be glad I’m not married to him, and have no legal standing to sue.

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Responses

Silverstar: I’m so sorry to hear this news. Please pass along my best wishes and healing vibes to the Boyo.

I was diagnosed with thyroid cancer (papillary) about 15 years ago. Found the lump myself and went to the doctor. Ultrasound confirmed the lump was a “mass”, but the fine needle biopsy was inconclusive. Still the physicians labelled it cancer, scheduled me for surgery and out it came. Maybe too fast. Ultimately, the tissue analysis came back benign, which was good, but now I’m dependent on meds.

Don’t be so sure that things are all that different up here. It seems like physicians don’t really look at you anymore. You have to be your own advocate to get them to look at the frigging zebras. The Boyo’s lucky to have you riding shotgun.

Ugh! what a mess, what a shuffle. Like a nested stack of Zebras for the Boyo. you have been a good advocate – as bad as this has been, it would have far worse without you on the job. Give him an extra hug (gently) from me… and one for yourself…

Dear Silverstar,
I just saw one of your posts on LSG, and clicked through to see how you are doing. I’m so sorry (and angry and appalled) to hear about Boyo’s cancer mets. I agree, it should never have been ignored for so long.

I’m sending CB mojo to him and to you. He’s lucky to have you to go to appointments with him.
hugs
Heidi (loshakova on Ravelry)